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What Puts Youth with Autism at Risk for Being Hospitalized?

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
October 5, 2017

Children and teens with autism are more likely to be hospitalized for psychiatric care1 than their classmates. If we understand why, researchers ask, can we take steps to prevent their problems from reaching that point?

A new study outlines five factors that increase the risk of a psychiatric hospital stay in youth with autism spectrum disorder (ASD). They include, in decreasing order of risk, having:

  • a mood disorder (such as depression, bipolar disorder, or disruptive mood dysregulation disorder)
  • current sleep problems
  • more severe autism symptoms,
  • poor "adaptive" (or everyday living) skills
  • a single-parent household.2

This study is among the first published from researchers in the Autism Inpatient Collection (AIC). The U.S.-based project aims to learn more about youth, ages 4 to 20, who are admitted to one of six in-patient psychiatry units that specialize in developmental disorders. (Youth with autism who are patients on general psychiatric units are not included in this project).

About 1 in 10 youth with autism are admitted to a hospital for mental health care.3 Studies like this one may help lead to better care and prevention of the behavioral crises that land youth in the hospital.

Fewer Hospital Stays = Fewer Disruptions to Youth with Autism

"By working to understand the factors that may increase a child's risk of landing in a specialized psychiatric unit, we might be able to deal with these risks in an outpatient setting," said lead author Giulia Righi, PhD, an assistant professor at Brown University's Medical School in Rhode Island. Fewer hospitalizations mean "fewer disruptions in a patient's living situation, family life, and schooling," she said.

For the study, researchers compared 218 youth in the AIC project to a "control group" – 255 youth with autism who had never been admitted to a psychiatric unit. Control groups members were part of another project, the Rhode Island Consortium for Autism Treatment and Research, or RI-CART. The control group members were matched by age and sex with the hospitalized youth, so that those factors did not affect outcome.

Looking at Mood and Sleep Habits in Autism

photo of autism researcher Giulia RighiThe study found that having a mood disorder, such as depression or bipolar disorder, raised the risk of being hospitalized by seven times, by far the biggest risk factor studied.2 Mood disorders are a major cause of psychiatric hospitalization in adults who do not have autism, according to other research.4

Mood disorders are one of a number of mental conditions that appear to be more common in autism, including attention-deficit hyperactivity disorder (ADHD) and anxiety.5 Seventy percent of children with autism have one separate psychiatric disorder, and 41 percent have two or more, according to a different study.6

Having a current sleep problem doubled the risk of being hospitalized in youth with autism.2 Although not a symptom of autism, sleep problems are common, affecting some 50 to 80 percent of children with autism.7-11

To reduce the risk of hospitalization, the researchers recommended that healthcare providers provide "thorough assessment and treatment of mood and sleep conditions" in youth with autism who have those symptoms.2

Symptoms of Autism that Raise Risk

iStock photo of children brushing their teethThe next highest risk factor involved a symptom of autism. Youth with more severe problems with social and communication skills faced a higher risk of hospitalization. One symptom of autism, however, seemed to have no effect on admission rate. Both the AIC and control group had similar levels of repetitive motions and obsessive interests.2

Having poor adaptive (daily living) skills also increased risk. Adaptive skills include age-appropriate activities such as bathing, brushing one's teeth, crossing the street, making a sandwich, and other self-care skills.

Previous research has linked poor adaptive skills or severe social impairments with aggressive behavior.12-14 A child or teen who is an immediate danger to himself or others – due to self-injury and aggression – would qualify for psychiatric hospitalization.2

Youth with more severe forms of autism are not the only ones who struggle with daily living skills. In fact, one study, involving youth in the Simons Simplex Collection research project, found that teens with autism who had average to above average intelligence also had problems with daily living skills.15

Family Stress and Respite Care

These types of situations are really draining on a family.

Dr. Righi's team also found that children from single-parent households were more likely to be hospitalized, although researchers do not know why. One theory is that a single parent – who doesn't have another adult in the home – may be less able to keep a child with challenging behavior from hurting himself or siblings.

"These types of situations are really draining on a family," Dr. Righi said. "Studies show that offering respite care to families does have an impact and is associated with a reduction in inpatient hospitalization." Respite care is a service in which trained caregivers watch someone with a disability so that his parents can take a break for a few hours or a weekend.

Respite care is important for two-parent households, as well. Susan Boyd lives with her husband, daughter, and 11-year-old son with autism in a small community in northern Maine. Their area is best known for its potatoes and blueberries, but not for its autism services, she said.

Mrs. Boyd said she has had problems getting respite care for her son, who is a participant in the AIC project. "We could really stand to find a babysitter. Last Christmas, we couldn't find anyone to watch him during my husband's Christmas party at work, so my husband had to go alone and I stayed home. Ironically, the party fell on my husband's birthday."

A Disconnect Between Hospital and Community Care?

photo of blueberries by Jeremy Ricketts, UnsplashHer son has been hospitalized for behavioral problems more than once, she said. The biggest problem for him, she said, is the follow-up care he receives after he's discharged. While an inpatient in a developmental disorders unit at Spring Harbor Hospital, an AIC site in Maine, he receives medical and educational services from autism experts, she said. However, those services are not generally available in her corner of Maine. "The staff at Spring Harbor has him going in a positive direction, but when he comes home, nobody will take their recommendations seriously, and they don't abide by them."

For example, she said, Spring Harbor made recommendations to help Tyler communicate using a picture communication system. Tyler has few words due to apraxia of speech, in addition to autism. "Tyler gets so frustrated when he wants to tell you something," she said. His school tried the picture system but decided it did not work. Also, she said the school did not follow the hospital's recommendations about when and how her son should use an iPad mobile device during school.

Spring Harbor also recommended some in-home behavioral support services but they, too, did not work out as planned, she said. Tyler was re-admitted to the hospital this summer to address some medical and behavioral concerns, she said. Although his hospitalization poses a hardship to the family, Mrs. Boyd said, she believes he is receiving good medical care and schooling while there.

A number of children and teens from AIC units have been hospitalized more than once, and researchers want to know why, said Dr. Righi, a cognitive scientist. "We're examining factors related to receiving multiple inpatient stays in a short period of time. A lot of individuals are returning more than one time for inpatient stays," she said.

Hospitalized Youth Challenge Expectations

It's an important area that needs to be explored further.

photo illustration of white pillsA separate study suggested that AIC youth are more complicated than expected.3 For example, researchers had expected the youth would be admitted to the hospital taking multiple psychiatric drugs, and that they would be discharged taking fewer medications. But that's not what happened.

Most of the youth remained on roughly the same number of medications, although the dosage or types may have changed during their hospital stay. The most common drugs were antipsychotics, ADHD medications, and sleep aids. "We may have underestimated the severity of our patients' needs," said the study's lead author, Logan K. Wink MD, an associate professor at University of Cincinnati College of Medicine.

Interesting, the biggest change in medication came after discharge, when the youth were home and presumably being treated by community doctors. At discharge, almost all of the patients were taking at least one psychiatric drug, compared to 64 percent two months later. Antipsychotics were the most frequently discontinued drugs, followed by medications to improve sleep and ADHD symptoms. The researchers could not say what this trend means, and are continuing to study these patients. "It may be related to outpatient providers recommending changes or parents feeling that their children don't need the same medications after discharge as they did before," Dr. Wink said. "It's an important area that needs to be explored further."

Another possibility is that parents may be forgetting to report some medications at the two-month follow-up, said psychiatrist Matthew Siegel, director of the AIC study. The drop is medication usage "is really interesting," he said. "I don’t think we understand it yet."

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Photo credits: 1)iStock, 2) Guilia Righi, 3)iStock, 4)Jeremy Ricketts, Unsplash, 5)Hal Gatewood, Unsplash

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